Patient Stories

Living with Parkinson’s Disease, by Susan Mollohan

When I worked as Dean of Students at a New Hampshire High School, I used to say no two days were alike. Little did I know how that statement would hold so true. I went to school one day in March 2009 thinking there was nothing wrong with me, but by the end of it I was afraid that I had Parkinson’s Disease (PD).

A neurologist later confirmed what the school nurse guessed—Parkinson’s was causing the tremor in my fingers. I had an incurable, progressive neurological disease, which on that day was all I knew about Parkinson’s—other than that it was the disease that actor Michael J. Fox had.

In the first year of my diagnosis, I began learning about Parkinson’s so that I knew more than that simplistic definition of PD. I would read, ask questions, and read more. I kept my diagnosis somewhat private, telling only a select few, including my three children, my secretary, and a man I had been dating for just a year. When I offered him “an out” he offered me a diamond ring, and in October of 2011, he vowed “in sickness and in health.” Steven is my partner, my love and my caregiver. He helps, supports, and listens to all my Parkinson’s woes. In the last 8 years, we have watched Parkinson’s change me, my body, and my activities. Together we have grieved the losses that come with it, while also delighting in the good that comes with it, or as Michael J. Fox calls, silver linings.

How can something progressive, degenerative and incurable have any good associated with it? For me, the good has been meeting many people affected by Parkinson’s— including Michael J. Fox. It’s been participating in a 50-mile bike ride for Parkinson’s research every September, observing its growth from only 65 cyclists to the nearly one thousand expected in 2017. Through my participation in the New England Parkinson’s Ride, I have met so many people for whom no two days were, or are, alike anymore. And yet these people are hopeful, and they come out to bike and to volunteer.

No longer the Dean of Students, a job I loved and miss every day, I am now passionate about educating others about Parkinson’s Disease. Parkinson’s can affect one’s eye sight, voice, cognition, continence, moods and balance. Each day that a new PD ailment strikes me, I learn about it. Some people with PD don’t have tremors. Others have rigidity. Others—both. (That’s me.)

Parkinson’s affects one’s eye sight, voice, cognition, continence, moods, and balance; but there is a pill for each of those. Those of us with PD are fortunate that research has discovered medicines to aid the many symptoms—if the medicine still works. At one point, my meds were wearing off quicker than the day before. I just needed to take more dosages; more pills. My neurologist suggested I consider Medtronic’s Deep Brain Stimulation (DBS) Therapy, so I learned about that too.

During DBS Therapy, a lead placed in your brain (while awake, no less) is connected to wires under the skin behind your ear and down your neck. These wires are connected to a pacemaker-like device called a stimulator. Medtronic’s device sends electronic signals to areas of your brain that control movement. Stimulating these areas blocks the signals that cause disabling motor-symptoms of PD.

Amazing! Thank you, Medtronic. I had DBS surgery last July and no longer have tremors, nor am I rigid. The medicine that I was taking every 3 hours (and that was not enough) has since decreased by about 40 percent. Those drugs had negative cognitive effects on me. I was not able to concentrate enough to read a book. I just finished reading one, something I had not done for 6 years.

So, what can you do about Parkinson’s disease? If you have it, do something about it! Volunteer for a Parkinson’s related organization, participate in a research study and continue to exercise (very important). Embrace it and make the most of it. I am so grateful that I can get back to doing the things I love to do.